Polymyalgia

Hi

Sorry to hear how bad you are feeling Im out of my depth with your treatment as Im afraid Ive only had steroids as treatment Why do you have to come of Methatrixate for 2 months ?? I know several people who take MTX for other illnesses and havent had a break from it

Ive had PMR twice so have together with both bouts had it for nearly 6 years but I did have a complete break of over 3 years in between

Im sure someone Mrs O or Mrs K possibly ?? who write on here mentioned someone who had finally got rid of it after many years

It seems as if you need a bit of urgent help form somewhere and there has been mention of Lefunomide on either this forum or the PMR/GCA North East Forum Have you joined that ?? Eileen who contributes to both has a great deal of medical knowledge and Im sure will be along to help you more than I can !

Best wishes

Mrs G

Hello Posh Spice!

I'm sorry to hear what a difficult time you are having even especially after so many years with this debilitating illness.

As far as MTX is concerned, there are a couple of people posting on both this site and the PMRGCAuk site who take this and I'm sure they'll be along with their experience. Also you will find someone's story of her experience with MTX on the pmr-gca-northeast.org.uk site. You haven't said why you have been taken off this and whether you were weaned off it gradully but I'm wondering if, like steroids, you can get withdrawal symptoms from MTXl.

It may well be of benefit for you to try the alternate day dosing as you are at the dose of Pred where that can be tried (it is only advised for those taking under 10mgs and under). MrsE (EileenH) follows this regime so she is the best person to advise you on this and I'm sure she'll be joining in shortly.

Very best wishes,

MrsO

Hallo Posh Spice and comiserations.

I can't match your 7 years but have had two bouts with 5 years in between. First time was more or less text book. Started on 30mgs. which was standard in Sept. 1999 and down to nil in exactly 3 years. Second episode began in Feb. 2008 and is continuing so 6 years 4 months altogether. I have had more problems this time both with Pred. side effects and ups and downs with pain and doses. This time the thinling was start on 15. I am now down to 4 and not doing too well painwise but hanging on and hoping it's just a matter of time to adjust to the lower dose. I have PMR, no GCA symptoms.

I will repeat the story, previously told on here, of a male friend who was eventually diagnosed with GCA in his fifties and eleven years later was completely and some twenty years later remains symptom and drug free. It gives me hope but, of course, he \"only\" had GCA not PMR.

I am an active ( gardening, own house work, animals and one time teacher of samll children ) 79 year old. Have never smoked, never been overweight, really do eat 5 or more fruit and veg and only wholemeal bread so a rotten advertisement for the recommended lifestyle and feel pretty indignant as I sense you do.

Re the cocodamol; Like you I find it does take the edge off the bad days but don't like taking it often as it does make for sleepiness. I experimented and found that it still dulled the pain if I took as little as half a tablet twice a day and no sleepiness ( or constipation! )

Untypical bad temper rather than weepiness. Had a paddy this morning because the washing machine soap container had disappeared. Luckily my nearest and dearest are sympathetic but I despise myself when I lose control.

Seem to have gone on a bit, Time to stop.

Stick with it and keep coming back; we're a decent lot and someone will always respond.

Hi there, Posh - I am a couple of years ahead of you - 9 years and counting!

I've been on Pred for all of those years in varying doses as the PMR and other conditions dictated, I am also on Methotrexate, 20mg at present.

(Mrs. O, no, you don't need weaning off Metho, it can be stopped and started as necessary and it stays in the system for some considerable time).

I've been on it for 18 months now as a steroid-sparing agent and last year it allowed me to get down to the lowest dose of steroids I've ever been on, 2.5 daily. Unfortunately it was short lived as I had a GCA flare-up at the end of February and am currently on 12.5 a day, but hoping it will help this time round - it does seem to be useful as I've really had only a couple of minor blips reducing from the initial 40mg.

I don't get too many side effects from co-codamol, but equally it doesn't do much for the pain, I find. Does take the edge off, but that's about it.

I get just as much pain from the high steroid doses as I do anything else, as it affects my legs and feet badly, but better that than losing my sight.

I've also got Fibromyalgia and it's difficult to know which pain is which, sometimes.

I'm hoping that I will be down to reasonable levels of Pred by the end of the summer, but only time will tell on that one.

You have my sympathy!

Nefret

Hi Posh spice,

I was diagnosed in Dec after feeling ill since the previous June/July, so 12 months & counting for me.

I have P.M.R. & G.C.A started on 50mg preds down now to 22 1/2.

Like you I feel very low on times & cry , again not like me.

I moved here 5 years ago & decorated every room myself, kept the garden tidy , was my husbands carer, generally fit & always on the go.

Now I feel robbed, as I feel like an old lady , though I am only 69.& as I said before was pretty much fit & healthy & enjoying my life.

My husband luckily for me has improved in his health , so now we care for each other.

I take co-codamol when needed 1/2 a tablet helps sometimes of 30/500 mg.

I also take Nytol to help me sleep, the one a night .

I do sympathise with you, as I am sure all of these wonderful people here on this site do too.

They have helped me enormously when I have been at rock bottom , so keep tuned in so to speak , as they will give you hope.

Keep your chin up

Cheers Amycakes.

Hi Posh Spice,

I am a novice to this illness compared to you as I was diagnosed at the start of April last year. I had been ticking along reasonably well until April of this year, when I started to regress badly :cry: .

My Rheumatologist now feels that I may have Rheumatoid Arthritis in addition to / instead of PMR and I have been taking Methotrexate 10mgs weekly with 10mgs steroids daily for the last month. I still have a lot of pain in my wrists, elbows, shoulders and knees, but am hopeful that when I increase the MTX to 15mgs next week that I will get a bit of relief.

I often get \"the weepies\"....generally when I am alone as I don't want to upset the family by crying in front of them :wink: .

The tears are not from the pain, but from sheer frustration as I just cannot do the things that I want. I am 52, and before I developed this I played golf 3-4 times a week and walked every day and tended my garden as well as doing things for my Mum & family......so having days that I am totally incapable of even carrying a bag of shopping tends to make me very cranky :oops:

A common thread with the people on this forum is that, regardless of age, we have all been pretty active prior to PMR and therefore the limitations that it puts on our daily activities is all the more frustrating :roll:

I reallly hope that you start to feel better soon....you have all of our sympathies as we know exactly what you are going through.

best wishes, Pauline.

:roll: Hi guys, Thanks for all of your support - much appreciated. I know I am n ot the only one suffering - never heard of so many people with this disease....never heard of it until I got it.

Took the plunge and upped my pred to 10mg today - here's hoping.

came off the MTX after 3 years as after it was increased in January I started having side effect. Rheumy decided to give body a rest...I was pleased at the time!!! Not so sure now........

Hopefully this bad time will pass, but like you all out there I want to do my garden, walk in town and climb the stairs without it being Mt Everest.

Be in touch after docs next week. CRP 45 ESR 27 so not too bad!!!

Posh Spice

PS Re cocodamol. I forgot to give the strength of mine. 8/500 and not very often.

Hi there PoshSpice I'm just a learner myself only had the PMr since November 2010 I try not to look at the years ahead and am ever hopeful that this will go away in time who knows.

Saw the doc today, waste of time. He wanted me to have another blood test in 3 weeks......I tried to discuss as to what levels of Pred I should be on - just repeated \"wait for blood test\" so what am supposed to do. I could hardly walk in his office. I left the surgery and sat in my car and cried with frustration. Soooooooooo, decided to contact my Rheumy (I usually pay to see him!) and have it out with him. Incidently I did ask the doc about Fluonomide and he said non of the RA drugs are any good for PMR and suggested I find a piece written by a Prof Dixon of Bristol Uni re PMR.

So took 10mg every other day - going to step it up to every day for a week and see. Pain killers not touching it.

Amy Cakes I can symathise with you today - life can be cruel at times. Hang in there. Someone will find a cure for this painful dissease....but not sure when. Frustrated Poshie

(NB) Posh Spice is a nickname given to me by my cake decorator friends as I used to come to lessons from work in my suit!!

Hi again

Drs can be very frustrating !! Perhaps they dont like being dictated to by a Rheumatologist ??

I personally would see the Rheumy ASAP When there is medication available to improve your quality of life you should be given it If you are a complicated case you need to be controlled by Rheumy and not Dr !

I am a simple case ( relatively !!) and am treated by my Dr When I first had PMR my Dr was convinced it was PMR but as my bloods werent very high the Senior Partner said no to steroids until I had seen Rheumy so as there was a 3 month wait I went privately as I was deteriorating daily The Rheumy confirmed it and authorised steroids With my 2nd bout my Dr was able to authorise them straight away but when I had a blip last year and I was quite down she did suggest a refferal but I said I prefered to see how it went and I have managed to get from 15 then to 2mg in about 16 months but had to go back to 4 now My 2nd bout will be 3 years in October If I continued to have to go up a lot I possibly would consider a Rheumy

The big problem is I know how PMR drags you down and the last thing you want to do is have to fight your case

I really hope you have some help soon

Mrs G

Posh, I love the idea of you doing cake decoration in your business suit.

Are you still working? ( Sorry cannot always connect the right situations to their owner! ). If so, is your doctor planning to give you sick notes until your tests? Would s/he be able to go to work hardly able to walk. ?

Posh

Some people posting here have very sympathetic and professional doctors but others are sadly lacking I'm afraid. In the case of PMR/GCA especially, you do need expert advice and if you feel your Dr is not being very helpful then you should definitely be under the care of a rheumatologist. I personally have been very lucky with my rheumatologist and have been under him for all my treatment.

When you have your private appointment, perhaps you could ask the rheumatologist if he could arrange for you to continue to see him on the NHS?

I hope you begin to feel better on the 10mgs daily and that you manage to get an appointment with the rheumy very soon.

Hi Poshie and welcome (thought you were still in LA????? :wink: )

I seem to remember that Leflunomide is being used by someone in a clinical trial to see if it can be used as a steroid sparing agent (i.e. you take it at the same time as pred to lower the amount needed to get an effect, like with methotrexate). The GP is right in that RA drugs alone have no effect in PMR but some groups are trying combining them because of the concerns about using steroids longterm.

The alternate day therapy (ADT) reduces the effect of the steroids as you have such a long time between doses where the body isn't subject to its noxious effects! That the theory at least, and it is used on many other diseases where pred is required longterm. You increase the dose on one day and reduce the dose on the other so that the total for 2 days remains the same, in steps until you get to double the original dose on one day and zero on the other. I am at 17mg/2 days and it works pretty well. The only problem since steroids is I've had is some weight gain since the PMR was diagnosed (but I've had PMR for about 7 years and put on weight in the 5 years before I was diagnosed from lack of exercise so is it lack of movement or the steroids?).

Your say your CRP is 45 - what units? I always understood it should be less than 1 to be good and my doc here in Italy measure high-sensitive CRP which should be less that 0.5 mg/100ml which would be 5 mg/litre. Your ESR is fine.

Yes everybody - I've just had a few days of a feeling of utter fury at what PMR has \"stolen\" :cry: I find little pleasure in listening to my favourite music now as I used to sing it myself and PMR took it away, I can't walk far and heat is awful. My clothes don't fit and I can't bear to look at myself in a mirror (the bathroom one is not TOO bad but full length - oh no :roll: ) and we just had a few days in hotels with mirrors opposite the loo, OMG!)

Eileen

Oh Eileen, I'm so sorry you are having a fat, ugly, furious session with PMR but I freely admit that, in spite of all the years I've been on this journey, that it still happens to me from time to time.

.........and I find now that I[i:d61e352df9] know[/i:d61e352df9] as soon as I wake in the mornings that it is going to be a fat, ugly, furious day!

Nefret